OBJECTIVES: Focal segmental glomerulosclerosis (FSGS) is a histologic pattern of glomerular injury reported in patients who present with proteinuria, chronic kidney disease, and sometimes nephrotic syndrome, and may lead to kidney failure (KF). This study describes epidemiology, treatments, clinical outcomes, and burden of patients with FSGS using United States Veteran’s Affairs (VA) data.

METHODS: We used data from the National VA Health Care Network from October 1999-February 2021. Patients were required to have ≥2 diagnoses of FSGS (first FSGS diagnosis as index date) and continuous enrollment for ≥6 months before and ≥12 months after index. Annual incidence and period prevalence of FSGS were assessed. Patient characteristics at index and medications, healthcare resource utilization, and healthcare costs during the 12 months following index were described. Overall survival and time from index to KF were evaluated using Kaplan-Meier analysis.

RESULTS: Average FSGS incidence and period prevalence rates from 2000-2020 were 19.6 and 164.7 per million VA-enrolled veterans, respectively. Of 2,515 patients with FSGS in the final cohort, median age at index was 59 years and 96% male. In the 12-month follow-up, the most commonly used medications were statins (66%), ACE inhibitors (60%), and calcium channel blockers (54%). Patients had an average of 34 outpatient visits during 12-month follow-up; 40% had an inpatient admission, with average 19 days in hospital. Average total healthcare costs were $36,543 during the 12-month follow-up, driven by outpatient ($16,072) and inpatient ($13,655) costs. Survival rates were 80% and 55% at five and ten years post-index, respectively. KF rate at 5 years was 55%, and median time to KF was 4.1 years.

CONCLUSIONS: FSGS is associated with substantial clinical and resource burden among patients in the VA. Safe and effective therapies approved for FSGS would significantly improve the lives of patients and reduce patient and healthcare system burden.